I am an autistic guy with a message. I spent the first half of my life completely trapped in silence. The second - on becoming a free soul. I had to fight to get an education. Now I am a regular education student. I communicate by typing on an iPad or a letter board. My book, "Ido in Autismland" is now available on Amazon. It is an autism diary, telling the story of my symptoms, education, and journey into communication. I hope to help other autistic people find a way out of their silence too.

Sunday, February 16, 2014

The theories regarding autism have been based on observation
of our odd behaviors. Lists of these behaviors make a diagnosis. I have limited
independence in selfcare. I have limited eye contact. I have flat affect often.
I can’t express my ideas verbally. I have poor fine motor control. I have
impaired initiation. I have impaired gross motor control. I have difficulty
controlling intense emotions. I have impulse control challenges and self stimulatory behavior.

Whew. When I write that it sounds pretty bad, but I function
adequately in this world. I am now 17 and I am a fulltime high school student
in a general education program. I am in Honors Chemistry, Honors US History and
Honors English. I am in Algebra 2, Spanish and Animal Sciences. I get straight
As. I work out with a trainer 2 or 3 times a week to get fit. I study piano. I
hike, cook, and help take care of a horse. I am invited to speak at universities and
autism agencies. I am the author of Ido in Autismland, and a blogger as well. I have friends.

I communicate by typing on an iPad with an app that has both
word prediction and voice output. I alsocommunicate by using good, old-fashioned letterboard pointing. If I had
not been taught to point to letters or to type without tactile support, many
people would never have realized that my mind was intact.

My childhood was not easy because I had no means to
communicate at all, despite my 40 hours a week of intensive ABA therapy. I
pointed to flashcards and I touched my nose, but I had no means to convey that
I thought deeply, understood everything, but was locked internally.
Meticulously collected data showed my incorrect answers to flashcard drills,
but the limitations of theory are in the interpretations.

My mistakes were proof to my instructors of my lack of
comprehension or intelligence, so we did the same boring, baby lessons year
after boring year. How I dreamed of being able to communicate the truth then to
my instructors and my family too, but I had no way to express my ideas. All
they gave me was the ability to request foods and basic needs.

Here is what I would have told them if I could have when I
was small. My body isn’t under my mind’s complete control. I know the right
answer to these thrilling flashcards, unfortunately my hand isn’t fully under
my control either. My body is often ignoring my thoughts. I look at my
flashcards. You ask me to touch ‘tree,’ for example, and though I can clearly
differentiate between tree, house, boy and whatever cards you have arrayed, my
hand doesn’t consistently obey me. My mind is screaming, “Don’t touch house!”
It goes to house. Your notes say, “Ido is frustrated in session today.” Yes,
frustration often occurs when you can’t show your intelligence and neurological
forces impede communication between mind and body and experts then conclude that
you are not cognitively processing human speech.

In my childhood I feared I would remain stuck forever in
this horrible trap, but I was truly fortunate to be freed when I was 7 when my
mother realized my mind was intact, and both my parents searched to find a way
to help me communicate without tactile support.

Thousands of autistic people like me live life in isolation
and loneliness, denied education, condemned to baby talk and high fives, and
never able to express a thought. The price of assuming that nonverbal people
with autism have impaired thinking is a high one to families and to people who
live in solitary confinement within their own bodies. It is high time
professionals rethought their theories.

Monday, January 27, 2014

As a researcher who studies ways to support the access and success of students with autism in higher education and a mom to a handsome six-year old son who uses an iPad to communicate, I aim to help Ido advance his message to educators, professionals, and caregivers. My objective here is to provide context and encourage you to learn more about approaches that enable nonverbal individuals to spell and type to communicate. I’ve received criticism for endorsing approaches like Rapid Prompting Method (RPM) because they are not evidence-based. There is still much speculation in the autism community about the legitimacy of RPM and other approaches that teach pointing to letters and typing. Research on these methods are lacking. I understand that professionals will continue to question these methods until they are rigorously studied and published in peer reviewed journals. I am the first to believe in well-designed research studies. As an academic, I also believe in being open to new possibilities, ideas, and presuming competence in individuals on the spectrum. Without this openness, I would have never exposed my own son, Diego, to RPM. He would not be where he is today with regard to sharing how autism affects him daily (e.g. “Paying attention is tiring”) and to articulating unusual ideas (e.g. “Eight elephants play in a new kind of ecosystem”). I would not know the level of depth of thought and curiosity hidden in his mind. Diego’s voice is now being heard.

Ido is a pioneer in advancing our knowledge about autism and people with complex communication challenges. Ido's book, Ido in Autismland, is by far the most powerful book I have read about autism. Other authors write compelling books about autism, prompting us to think about those on the autism spectrum. But Ido is different. He is extraordinary because hechangesthe way we think about autism. He disrupts our misguided notions that lack of speech equates to lack of intelligence; that students with autism are impoverished of expressing or recognizing emotions; and that all students who are non-verbal belong in special day classes without the opportunity for inclusion. Contrary to many of the messages the world receives on a daily basis about people with autism, Ido’s book tells us that the minds of people with autism are as complex, creative, and intelligent as yours and mine.

On a personal level, reading Ido’s book was transformative and allowed my relationship with my son to turn a corner. I now talk to Diego like I would any other smart and capable 6-year-old. I make efforts to talk to Diego, not about him, when he’s in the room. Ido, Diego, and children like them are nonverbal, affected by autism, and brilliant. By typing to communicate, they blow us away with their complex insights, imaginative ideas, and witty humor.

If you are a professional in the autism field, I invite you to think outside of the box about what “conventional wisdom” on autism tells us. Without doubt, this takes courage. It means acknowledging that we do not know everything about autism. You might learn, as I did, that our perceptions about the capabilities of non-verbal individuals are wrong. Rather than dismiss RPM or other approaches to support typing, I encourage you to educate yourself about the approaches. Interact with individuals who have learned to type. Read Ido’s book or watch videos of children and teenagers who point to letter boards or type independently. For example,

From one professional to another and from one parent to another, I urge you to take a chance to learn more before dismissing approaches to support our children who otherwise have limited means to communicate. We have the power to make real change by enabling the individuals we care for and serve to communicate in rich and meaningful ways.

Wednesday, January 8, 2014

My high school has an old farm because it has a magnet program
for intensive studies in veterinary science and agriculture. It is really nice because
the students care for the animals. Over vacation we have to feed them. There are
rabbits, hens, sheep, goats, a horse and a llama. The goats are intelligent and
eager to escape to eat leaves. They have the same lock the sheep have on their
pen. The sheep can’t open it but the goats open it with ease. To stay in, they
require an additional chain and clasp lock and if it isn’t on just right, they
escape.

Today was my turn to feed, water, clean and exercise the
animals (that is, I exercise and clean the horse and feed and water the rest).
We went to give the goats fresh water and in a flash they opened the gate and
rushed out to eat leaves. They group up and run away and resist you too so it
can be a struggle to get them back in, and the first ones you catch only want
to escape to get back to the leaves and their friends.

I was watching this because I was with my mom who asked me
to help her with the gate. I am able to do everything I need to do, more or
less, but it felt frustrating today because I saw that I still react so slowly
in a moment that required speed. I knew I needed to move fast because she had a
goat at the gate and didn’t want to lock up the gate completely since there
were more she had to put back in the pen. They struggle to get back to their
leaves with great intensity and it is a pain to hold a struggling goat with one
hand and fumble with a lock with the other.

Autism is an initiation disorder too. I see where I should
go and I stay frozen. Doing new tasks is tough because our bodies need to learn
the steps. The steps in this moment would be clear to a neuro-typical body, but
not to mine. Though my mind knew what to do, it just wasn’t ready to react in
time. This is frustrating personally, but perhaps even worse is that our
difficulty initiating certain responses confuses many specialists who then assume
we don’t understand logic and basic problem solving.

It isn’t the thinking that’s the problem. It is the ability
to react and follow our thoughts that we struggle with. I see my
skills have improved, because eventually I got to the gate and held it against
goats pushing with all their might to escape again. In the end, we got them all back in. Maybe next time we should let them out on purpose so I can get more
practice reacting to emergency situations more quickly.

Monday, December 30, 2013

A few weeks ago my friend’s elderly father was hospitalized. At the time he was confused, agitated and had worrisome physical symptoms. A doctor told my friend that she should place her father in a hospice, that his death was imminent. “What?” she responded, “He was driving just last week!” “Well,” said the doctor abruptly, “he isn’t now."

Today he is back home, back on his feet, and more active than he has been in months following the correct treatment of his symptoms by a different doctor. “What that doctor did was rob me of my hope for my father. I was crushed by his verdict and he turned out to be completely wrong,” she told me.

How can we fight when we are told something is hopeless? When there is no point in hoping we must be resigned and accept. When Ido was around six a doctor we saw who specialized in autism said that over the next few years it would become obvious whether Ido would be able to improve or would spend his life as a "low functioning" autistic person. This was prior to him having any communication and his true potential was totally unknown to us. She was preparing us to accept the low remedial, low expectations prognosis she saw as inevitable at that point.

I was thinking about these stories, and so many others, of professionals advising people to abandon what they saw as false hope, and then having their dire predictions turn out to be wrong. These professionals advised false deprivation of hope, in my opinion.

I have heard a few people suggest that Ido’s book may cause disappointment to parents whose children with autism may not learn to type as he does. Perhaps they believe that people with autism who have the potential to learn how to communicate their ideas are such rare exceptions that it is better if they keep silent and not give parents a chance to dream that their child too might have that capacity. Better to have low expectations, this reasoning goes, than to strive for more and have hopes dashed. Keep expectations low like this and you guarantee disappointment.

Every autistic person I know who now can express his or her ideas through typing was once thought to be receptive language impaired and low functioning intellectually. No teacher would have looked at them as children and said, “That one will be a fluent eloquent communicator.” That is because their outside appearance belied their inner capacity. Every parent of these children gambled and decided to pursue letterboard and typing without any guarantee of success.

Since Ido began typing a number of children we know personally also began to get instruction in use of letterboard and typing on an iPad or other assistive technology, either by Soma Mukhopadhyay at halo.org or in another method. And every single one of them has proven themselves able to communicate. Some are more proficient than others, but none had zero capacity. (This is different than rote drills of typing and copying done in many schools. This is specialized training in typing as a form of communication).

How would it have been compassionate to these children and their parents to lower their hope to the point that they would not even try these methods? Shakespeare said. “Better to have loved and lost than never to have loved at all.” In this case I would change it to, “Better to have tried and not succeeded than never to have tried at all,” because success may very well be the result.

Ido describes his experience of autism as being trapped in his own body, with a mind that understands and a body that doesn’t obey. Every nonverbal autistic communicator that we know of has expressed the same thing. How many more are waiting to find a way to express their thoughts and receive an education? Diminished expectations helps no one. I do not believe hope in this case is false, but rather, the denial of hope through misunderstanding and low expectations is what is false.

Tuesday, December 24, 2013

Guts means the courage to change. My book, my speeches, and my
efforts have challenged people who have gotten accustomed to seeing severe autism
in a traditional way. We need rudimentary lessons. We need drills to learn
words, understand emotions, recognize the people in our lives, notice gender.
We need baby talk because we don’t understand English or speech. We need
M&Ms because we have no motivation. It is an illusion to imagine we can be
more.

So, I am honored and amazed when parents and educators write
to me that my explanations changed this thinking after years of seeing it one
way. One person said it “hit him like an anvil on the head." One described how
he was, “shaken to the core.” One mom wrote a long letter about how she had
always believed that the potential for her son to type was “delusional,” but
after reading my book she understood how he could be smart but trapped
internally. Now she types with him freely. He is 20 and finally able to
communicate his ideas and finally is seen as intelligent. Brave moms, Brave
dads, because they now have to face systems that have to look at why their
methods could not see this possibility in the person with autism.

“I now speak normally with my son and it has changed
everything,” I hear over and over. “I see my students differently,” I hear as
well. One brave teacher wrote that she now wonders if she has been going at it
wrong for decades. Kudos to them for thinking openly. It is guts.

I will tell you one lady with guts is my old teacher from
when I was small. I write in my book how I loved her in spite of my frustration
and boredom in her class due to babyish lessons and repetition. Fate has plans
and recently my mom ran into her many times after years of no contact. After several
weeks she told my mom she would like to read my book. I knew it would be
painful for her because I talk about her- not by name, but she would know. I
wrote her a note. After reading my book she came to my mom with a letter for
me. She wrote that she tried to read it through my eyes. She was powerfully
impacted and was determined to teach differently, to see her students
differently too. She has been teaching a long time. This is guts and I admire
her.